View Full Version : I need HELP!!!!

05-22-2011, 07:48 PM
Hi, Im Jyrah,
I am 18 now but when i was about in the third grade I started to notice aches in my body and my bones would break very easily. I about seventh grade i started having very bad hip problems. Ive been seeing different specialist for about 8 years now and nobody has diagnosed me with anything. Been tested for lupus, sickle cell, arthritis EVERYTHING!!! But i am anemic!! and i i get older i notice more, such as IM ALWAYS TIRED. Ex, this past weekend i graduated from high school and all my friends wanted to party, but i just felt so down and fatigued i came home to lay down. And all of my friends think im crazy because they dont understand that one day i can be perfectly fine but the next day be totally out of it.
The last doctor i saw told me that it could be possible that the blood work is coming back false negative.. did anyone else have this problem?? just in need of support because im tired of all of the doctors visits, pain, and waiting for and answer!!

05-22-2011, 08:01 PM
Hi Jyrah and welcome to WHL! Trying to get diagnosed can be such a difficult thing! The stress of people telling us that everything is fine when we KNOW it isn't fine is enough to drive us crazy! There are MANY people here who have gone months or years waiting for a diagnosis. There is no blood test for Lupus although there are several that can help confirm a diagnosis if other criteria have been met. There is a "sticky" (means it is at the top of the page) in the Newly Diagnosed section that can tell you about the criteria for diagnosing Lupus. You will notice that not all of them are blood tests. The problem is too few doctors really know how to diagnose Auto Immune Diseases.

Take some time to look around the site. There is some wonderful information here and hopefully it will give you some much needed information. I am so glad that you decided to join us. I look forward to talking to you soon!

05-22-2011, 08:08 PM
thank you sooooo much!! it is so great to know i am not alone.

05-22-2011, 09:18 PM
I have lupus and my 19 year old daughter has "undifferentiated connective tissue disease", which is kind of a catch all for autoimmune symptoms that don't really fall into any other category. We have been looking for answers since she was about 6 years old, and we still have to justify that diagnosis every time she gets a new specialist. She has multiple medical problems, but the autoimmune one is the one we have to fight for because her lab work is normal, too. Fortunately her doctors have allowed her to take "lupus meds" and they have helped a lot. Maybe that doctor who talked about the false negative lab results would consider starting you on Plaquinil, or a short trial of prednisone to see if it makes a difference?

My advise to you is DON'T GIVE UP. Are your parents supportive? Keep them involved in your search for answers, get one of them to go with you to your appointments, give them written permission to talk with the doctors on your behalf so that when you are too tired or discouraged to fight, they can fight for you. Make a list of all your symptoms and take it to your appointments and hand it to the doctor. That can save a lot of time and the doctor has something to refer back to when they are writing in your chart. Sometimes doctors are intimidating and you get nervous about telling them everything - if it's written down you don't have to find the courage to say it out loud.

Congratulations on graduating! That is a tremendous accomplishment. I know it's hard to be too tired to go out and celebrate, but you got to put on that cap and gown and got your diploma! Are there more parties in the next few weeks? Around here, they get spread out over several weekends. Maybe you'll have the energy to go to another party down the road. My daughter is reading over my shoulder and she says it's worse to miss the party than it is to go and feel crappy. So maybe go and claim a comfy chair and let everyone come to you!

I hope you continue to visit this site and to post. I know I will definitely be looking for you here.

05-22-2011, 10:21 PM
thanks alot gizmo that was very helpful, the hardest part for me is going to the doctor and they tell me everything is fine when i clearly know its not. But im a fighter so i refuse to give up. but this is already helping me some emotionally because i dont have the feeling of loniless anymore, there are ppl here that understand my pain. in the beginnig my parents were supportive but now i think the have given up which makes this journey even more difficult to go through alone!! i will definately take heed to what you have said!! very very helpful!!

05-23-2011, 01:03 AM
it is hard when people do not know what is wrong. there is lots of auto immune disorders (63). there symptoms overlap.
lots of specialist find it hard to agree what is happenning to our body. they do not understand how this part of our body works.

if they get it wrong, how can we expect to understand.

it is a new science.

our family here understand the frustration, and the isolation feelings.
we care, because we are sick also.

welcome, hope you find some comfort in our family.

05-23-2011, 02:42 AM
Hi Jyrah,

Welcome to WHL and nice to have you with us plus congratulation's on your graduation.

Like yourself i started having things happen from 14 but at 18 things really did hit me like seizure's, strokes etc and 4yrs ago my skin went bad and a dermo said i had raynauds, bloods was done and in the meantime i was refered to one of his clients in rheumo who took my history and had the blood results, told me everything i'd had from 18 was what Lupus had caused and i was born with it, so in the meantime i've been diagnosed with what's in my signature and i was lucky because they got this straight away with my bloods but it took 6mths for the anaemia to show positive and i was so low with energy and aches and pains like yourself.

There's so many member's on the sight had bloods done like yourself and things don't show because Lupus fluctuates the blood bad and if you do have Lupus or any Autoimmune Disease, if could be giving off false reading's when you could possibly have it, the symptoms your going through sound to me like you have it but i'm not a doctor to say yes.
Have they got you on something for the anaemia as that's very important because it took a while for mine to show 8.0 i'm now on Folic acid tablets each morning besides B12 Jabs for life, the false reading's it was giving off was 13.5 which is good for a woman.

I think your specialist could at least prescribe you with something to help at least, if they may have an idea it's that, i'm going through a fare bit myself until meds can be sorted so i take up to 4000mg of paracetamol daily to help my pain, i really sympathize with you.

If your feeling stressed or have depression Lupus loves that, it's the main symptom it loves living off and it can make your symptoms feel abit worse, i always tell member's this and it's also a true known fact where Lupus is concerned anyway but myself i'm a manic depressive and when it pulls me down the pain itself kicks mine off and then i'm blurting away for days.

It's a process where bloods are going to be continually taken till something shows it's hugley head.

It will be lovely getting to know you.

((Hugs Terri)) xxx

05-23-2011, 04:35 AM
Many people have posted about how frustrated they are with a lack of diagnosis and dealing with doctors. It is so common, I think it should be one of the criteria for a lupus diagnosis (LOL). Chances are your parents are dealing with their own sadness and fear for your future, and probably don't know how to help you. Maybe you will get some new ideas on this forum that you can take to them and come up with a "game plan." Maybe you would feel comfortable sharing some posts from this site that might help them see that you are "typical" in our little world here. My husband and I will never give up on our daughter, but sometimes we mentally throw in the towel for short periods of time. The trick is to constantly look for new information and people who might be able to help you. Telling your parents that you need them to do that with you might be a relief for them. It's tricky when you are legally an adult - they might feel like they can't be as involved anymore.

05-23-2011, 06:09 AM
Hi Jyrah
Welcome to WHL! I'm 18 as well. I'm also very tired right now and cant think straight but I just wanted to say hi =) I'm sorry you're having such a hard time getting a diagnosis!

06-09-2011, 12:47 AM
Hello Jyrah,

I've not seen you on for abit, how you feeling mate in yourself please let us know.

Terri xxx

06-09-2011, 02:30 AM
Jyrah, welcome to this lovely group who will encourage you and validate all your suffering. You are speaking many words we have all spoken. It took years for me to be identified, and so many people thought I was lazy, depressed, etc., but I knew and just kept holding on to my faith. I document everything and only go to docs that will respect me. I now have a pretty good team of docs. You can fight the good fight dear girl. Hold on "Help is on the way." (((hugs))

06-13-2011, 03:54 AM
Hi Jayrah,

I do hope your feeling fine and please let we know if possible if your ok (thinking of you)

Terry xxxx